Making strides toward greater Fabry disease awareness
The awareness month may be ending, but our efforts should continue year-round
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Fabry Disease News kicked off April’s Fabry Awareness Month with an article explaining the purpose of the month and how our community can get involved. One way to participate was by joining a virtual run/walk fundraiser hosted by the Fabry Support & Information Group (FSIG).
Neighbors gather for a Fabry awareness walk in Irving, Texas. (Courtesy of Susanna VanVickle)
FSIG shared four simple steps for joining the campaign. I completed the first two by registering for the virtual walk and ordering the T-shirt. I figure activism doesn’t always require a Herculean effort. If enough of us take small steps, we will see a shift in the national, and possibly global, awareness of Fabry disease.
The third step was to spread the word. While social media offers a fast, wide-reaching way to shine a light on Fabry disease, I do not have any form of social media. So I made efforts to weave Fabry awareness into my conversations with friends, neighbors, and colleagues.
Step 4 was to walk. Since this was my first attempt at rallying people to walk for a cause, and I don’t yet have contacts for other Fabry families in my area, I did not go all out in organizing an event. However, I did invite families from my own neighborhood to meet at a nearby park to walk in support of Fabry Awareness Month. A small group gathered on a cloudy weeknight and walked around the park. This casual yet purposeful venture was easy to pull off.
Continuing awareness beyond April
Like a marathon, Fabry disease awareness is a long-distance endeavor, and each step in the right direction gets us incrementally closer to our goal. Staying active in the Fabry community year-round is an important way to keep the momentum going.
So how can we make strides toward a future where Fabry disease is publicly understood, diagnosed, and treated?
First, we must recognize that awareness shortens the path to diagnosis and treatment. The more people know about Fabry disease, the more likely it is that patients are diagnosed sooner and that resources are allocated toward research and next-generation therapies.
The VanVickle family holds the proclamation of Fabry Awareness Month for the state of Texas. (Courtesy of Susanna VanVickle)
Second, let’s get the word out. The need to raise awareness of Fabry is not limited to a single month. Your conversations, social media posts, or grassroots gatherings can have a ripple effect in your community. If you have no idea where to start, check out some of the Fabry organizations that share specific ways to get involved in advocacy.
For the past two years, I’ve had the opportunity to spread the word in Texas, simply because I responded to an email from the National Fabry Disease Foundation (NFDF). In 2025, the NFDF was seeking volunteers to write to their governors, requesting them to proclaim April as Fabry Awareness Month. The foundation made it simple and straightforward to submit the request online with the information they provided, plus a personal touch.
By giving only minutes of my time, I was able to see far-reaching results. So, this year, I gladly submitted another request, and my family received our second certificate from Governor Greg Abbott. The proclamation, adorned with the official State of Texas seal, calls for the observance of this month as Fabry Awareness Month in our state, offering encouragement to Texans who live with this rare disease.
Last, keep in mind that shaping the future is not a matter of moving mountains overnight. Often, just showing up in small ways consistently is all it takes to create a lasting impact. Anyone can be a voice for Fabry awareness, and now is a great time to start.
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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